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Caregivers' guide by #MEAction

Discussion in 'Caregiver support' started by Joh, Jun 14, 2018.

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  1. Joh

    Joh Senior Member (Voting Rights)

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    Joh, Jun 14, 2018
    #1
    rvallee, adambeyoncelowe, alktipping and 4 others like this.
  2. Trish

    Trish Moderator Staff Member

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    I've had a quick read through. It looks very good.

    But - Section 1 describes going to lots of different doctors and specialists and trying lots of off label treatments and supplements as thought that was the normal procedure for ME.

    That does not reflect my experience, nor that of a lot of people in the UK. A much more likely scenario is GP only, with a few basic symptomatic treatments for pain and sleep, or referral to CBT/GET, or IAPT therapists. And no off label treatments allowed to be prescribed by the NHS or NICE.
     
    Trish, Jun 14, 2018
    #2
    Dx Revision Watch, rvallee, adambeyoncelowe and 12 others like this.
  3. Joh

    Joh Senior Member (Voting Rights)

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    Haven't manage to read it yet.

    I agree and think that's mostly the reality worldwide, I don't even manage to get symptomatic treatment for basics like sleep or pain.

    It is encouraged to leave comments in the document directly (I think it only works if you access it through the #MEAction website via the following link, because it's automatically converted on the S4ME website) https://www.meaction.net/caregivers/

    or to contribute to the document or provide feedback by emailing to editor@meaction.net
     
    Joh, Jun 14, 2018
    #3
    rvallee, adambeyoncelowe, alktipping and 7 others like this.
  4. Trish

    Trish Moderator Staff Member

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    Thanks, I'll e-mail the editor.

    Edit - done.
     
    Last edited: Jun 14, 2018
    Trish, Jun 14, 2018
    #4
    Gecko, adambeyoncelowe, JaimeS and 8 others like this.
  5. Wits_End

    Wits_End Senior Member (Voting Rights)

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    This is very confusing: when I click on the original link, I only get a 1-page document. When I go to the website I get 2 pages. Yet the screenshot shows 1/9. ????
     
    Wits_End, Mar 8, 2019
    #5
    adambeyoncelowe likes this.
  6. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Snowdrop, Mar 8, 2019
    #6
    Amw66 and adambeyoncelowe like this.

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